Blog: Living Mighty Well

Spoonie Stories: Coming to Terms With Your Disability

February 22, 2015 | Lian Najami: Haifa, Israel

It all started eight years ago; I was running on the track when I was no longer able to lift my knees high enough. I couldn’t understand what was wrong with me, what had happened to my body, or why, all of the sudden, I started losing my balance. I scheduled a meeting with a doctor, more specifically, a neurologist. He admitted me to the hospital, a 12-year-old girl, for 14 days in order to run some tests and to see how we could proceed from there. Examined by doctors from different departments all trying to figure out what was wrong with me, I was anxious and unable to grasp my new reality.

 

3After being informed by my doctor that I had a condition in my nerve system, an irreversible one, I wasn’t able to understand how my own body could fail me like that. Sure, I was upset and depressed but not for too long. I knew that I could not blame my body, or myself, for something that is beyond me. I knew I had to accept this new reality.  A reality in which I was losing my muscle tissue, a reality full of doctor’s meetings, a different reality from the one I was used to.

I was labeled as a disabled person, and I hated it! I believe in the power of words and I refused to be described through the lens of my disability. Therefore, I started to address myself as a person with a disability and giving my personality a chance, making sure I am showing the world my real worth.

After eight years of an ongoing process, I realized that obstacles are there to reveal your strength. My disability was supposed to hold me back. Luckily for me it did the exact opposite: it pushed me to work harder, to prove to the world and to myself that having a disability is not a setback.

I like to think that I am strong person, and that I am inspiring others—both people with disabilities and people without—through what I have achieved in life and planning to achieve. But let us not forget that my condition is not an easy one, it had affected my daily life, my daily actions and had made me insecure. Insecure in my walking, worrying when is my next stumbles; insecure of my relationships with the other sex, and much more.

 

It is hard to stay strong and calm when all you have is chronic pains all day long, but not even the chronic pain can stop me from achieving my goals in life. I accepted that I am never going to be normal again, but I also realized that I don’t want to be normal any more. I want to be me, and if that means me with the condition then be it! I embrace myself as I am, and I am no longer going to be sorry for having a nerve condition.


I urge you all, don’t let your disabilities define you. Only you can define you.

 

Read more about being an advocate as a patient with disabilities: WE ARE PEOPLE 

 

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